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AUSTRALIA

CASK Coalition

What is the CASK Coalition?

The CASK Coalition is a group of like-minded collaborative CASK research non-profits. The aim of the CASK Coalition is to harmonize and mobilize the full force of CASK foundations toward advancing treatments and a cure for CASK disorders. Members of the coalition use their skills to assist one another, exchange ideas, share contacts and work together with the common aim of finding a treatment or cure for CASK disorders. We urge non-profits to prioritise collaboration over competition, for the sake of those suffering.

Why a coalition?

With roughly 300 confirmed diagnoses, the CASK community is small and dispersed across different countries. United by a Facebook group that offers a critical platform for sharing information and providing support across CASK families, the community is currently represented by multiple foundations spanning the globe.

Given the size of the community and the enormous obstacles to advancing treatments and a cure for rare diseases, the CASK community would benefit from collaboration in defining a community-wide research Road Map, promoting unified data collection, and undertaking fundraising and outreach collectively. 

MISSION

To facilitate collaboration between CASK non-profits and researchers in order to accelerate the path to a treatment or cure for CASK disorders. To enable one louder voice of advocacy rather than many small voices.

VISION

A world where a treatment or a cure for CASK disorders is found quickly as a result of collaboration.

VALUES

Committed – Collaborative – Expeditious

What does it do?

The CASK Coalition provides a platform to streamline collaboration across CASK foundations who become members, reduce redundancy across foundations for activities that can be globally managed, and promote greater engagement with the global CASK community to advance research. We advocate best practice and transparency within the CASK non-profit arena.

CASK Coalition roadmap

What have we achieved together so far?

Only being established in 2023, The CASK Coalition has already achieved so much together. From organising a successful first global fundraiser CASK Race for Research to launching an ambitious project, CURE CASK, to provide the female population with a gene therapy and raising $100,000 towards this. Their members, collectively, are part of larger organisations, such as Genetic Alliance, Eurordis, Global Genes and UKRET. Our motto is “Achieving More, Together”

Read more about our current member projects here:

Our members

The Angelina CASK Neurological Research Foundation is based in Australia and is a founding member of the CASK Coalition. They have raised over $150,000 AUD since establishing in 2020.

The CASK Research Foundation is based in the UK and is a founding member of the CASK Coalition. They have raised £50,000 since March 2022.

Association Enfants CASK France is based in France and is a founding member of the CASK Coalition.

The Angelina CASK Neurological Research Foundation is based in the USA and was founded in 2022.

Membership

Any non-profit whose main purpose is to fund scientific research into CASK disorders may apply for membership of the CASK Coalition. This will involve signing an MOU.  Membership is free. Following a successful application each organisation will undergo a 6 months probationary period. Upon completion of the probationary period the organisation will be invited to become full members, wherein they may use the CASK Coalition logo, be able to participate in the annual fundraiser and be part of the annual Roadmap review.

Why join the coalition?

By becoming a member of the CASK Coalition you will:

  • Benefit from a wealth of knowledge collected over years by member organisations. 
  • Expand your network
  • Be able to use an already established fundraising platform for your annual fundraiser
  • Contribute to the Global CASK Road Map
  • Be invited to the biannual CASK catch up meetings
  • Benefit from the shared successes of other member organisations.

What are the commitments?

The CASK Coalition will not undertake redundant activities with CASK foundations, nor will it independently fundraise for its operations or activities, unless this is determined to be of value in the future. Key activities of the CASK Coalition include:

  • Overseeing the CASK Data Collection Program (RARE-X) and other community-wide programs, including serving on the RARE-X PAG, recruiting CASK families to participate, and sharing accurate information with the community.
  • Participating in global fundraising activities such as the annual fundraiser where funds would go directly to respective CASK foundation members.
  • Assisting in the organizing of an international CASK research conference.

Any non-profits interested in becoming part of the CASK Coalition are advised to read the code of conduct for members and email admin@acnrf.com or info@caskresearch.org for further information.

If you are an individual considering creating a CASK research non-profit in your country we would love to hear from you to see how we can help.

“In some ways, that CASK-linked pathology is degenerative in nature provides a positive outlook. Because microcephaly in CASK-linked pathology progresses postnatally, there may be a temporal window when therapeutic intervention might prevent or slow further brain cell loss. Regression, even in adolescence, has also been observed in some cases of MICPCH [119], again offering the tantalizing possibility that a therapeutic approach might prevent such decline under conditions when degeneration is known to progressThe potential benefits of intervention might extend even further given that non-cell-autonomous toxicity could also affect functioning of the remaining neurons; reduction of such toxicity, especially when coupled with high-intensity rehabilitative measures [120], might offer real hope for a positive impact on functional outcomes.”   

https://www.mdpi.com/2073-4409/11/7/1131/htm